[kkrrhh]

I'm sure adult diagnosis is probably a pretty common topic, but I've been stressing out for a while about getting it done and have some questions.

I worry because everyone seems to say it's extremely hard to find providers to do it and it's really expensive, meanwhile I've just been crossing my fingers that I'll magically find a regular psychologist or psychiatrist who can do it and don't know if I'm totally wrong.

I do have insurance through medicaid that will completely cover some psychologists and psychiatrists. This includes my current psychiatrist who is not great, and some others who seem likely pretty mediocre from what I've seen. I haven't looked much further into any other covered doctors for this sort of thing, but I'm guessing a regular psychologist or psychiatrist is the best I'll be able to do. I know some people are simply diagnosed by a psych, and some have to see other types of doctors. What does this usually depend on?Also, a kind of stupid question, what other kind of doctor would I look for under my insurance? A regular neurologist, or...?

Am I completely crazy to hope I'll be able to show up at a typical psych and have them be able to offer/plan/do testing? It just doesn't even feel optional to me at this point, I feel I need to figure this out and at least attempt to find out the complete truth or I'll go crazy. It's become almost a constant focus the past few months, and on my mind for months before that. It of course makes it worse that I'm an adult and female, but I'm still (probably irrationally) trying to be hopeful I can find a decent evaluation. I'm at about 90% and not quite certain enough to "declare" a self-diagnosis.

The other worry I have is how long the whole process usually takes. Waiting list time and all included, what's the typical time frame? I've heard of people who say it took them years, and that terrifies me.
I've read about people mentioning seeming "too neurotypical" during tests because of the ways they've learned to cope over the years and act neurotypical. Part of what made me start thinking about this whole thing was being in a spell when I was somewhat isolated last year and rarely required to go out much if I didn't want to. I've always realized it seems when things are like that, in a way I feel I act more naturally and am different somehow. When I'm working/otherwise required to face the public every day, I feel a lot more tense/uptight and like I'm trying hard to be normal (it's always felt like much more than just the "mask" most people wear in public or my social anxiety and fear of judgement, which was the only way I had to explain it before; assuming I am autistic, I've realized it's probably actually me constantly trying to act neurotypical). Once I'm in this "mode," it feels like it's impossible to relax and pry off the mask for even one minute... Basically what I'm saying is, right now while I'm unemployed again and have been pretty isolated might have been an ideal time to meet the doctor and start the testing. I've meant to try for months but have been in a bad depression, but am hopefully going to be well enough soon to start a job. It sounds silly to complain about that, but I feel the "better" I am the less of an accurate representation of any of my possible visible autistic traits the doc/whoever will see, and I don't know how to be open enough that they'll realize that. I also worry that over multiple visits my "symptoms"/whatever will vary, because they just do. Like, let's say during a session one day they're especially watching my face...some days I'm more expressive, some days I'm not as much. I guess I'm kinda just overthinking.

Can anyone share their experience with any of these things during diagnosis?
How many separate visits/tests did you have? What do they do during each visit?
Also, how should I prepare, and is there anything I should bring whenever I do get tested? I've started jotting down a few random things in a notebook to help me remember (especially relevant things that pop up from my childhood as I'm researching - I won't be able to think well on the spot and remember) and I may bring it? I've also been saving some articles I've considered printing out and bringing, maybe even highlighting the parts that really made me go, "wow, that's me!" including some "unofficial" ones about autism in women. Would this be a good idea? I'm not sure if the doc would be likely to listen and use them, or just brush them off or even be put off and accuse me of self diagnosing.


As an aside, I have another question I've been wanting to ask opinions on, and thought I'd just ask here rather than making a 2nd topic.
My brother has definite diagnosed Asperger's, diagnosed a few years ago, so it is in my family. While exploring this whole possibility of being autistic myself, I've realized it also seems very very likely that my sister could be autistic as well. She's never brought up the possibility that I know of, and if I had to guess I don't think she's ever seriously considered it.
We're somewhat close, but I can't really guess 100% whether she'd want to know and whether it'd be best to bring it up to her or not. I can see the positive parts of bringing it up - just the increased self understanding and explanation for things in life (which is huge), the possibility that some of her other issues (chronic pain, dietary/stomach issues, mental illness) that can be commonly related to autism could have some link and that knowledge could in any way help better understand/treat them, other things.
But I see the negative, too. She, of course, might take it negatively or even as an insult, I don't know. There's also always the possibility that she'd be more hurt than helped by knowing...maybe it'd just bother her. I've already had a lot of turmoil and depression since "finding out" myself,
(although generally and in the long run I think I prefer to know) if I'm being completely honest, and that's just so far. Assuming she is autistic she'd be "high functioning"/"mild" (sorry to use functioning labels) to the point that she could go the rest of her life without knowing, and I don't know if that's best or not.

Especially to those who weren't aware or diagnosed until adulthood, are you glad you know? If you had the choice, are there any of you who would rather have just not known?


Sorry this is so long. To anyone who reads and/or replies, thanks in advance!

[nicklavender]

Hi K,

I get it.

All of it.

My name is Nick,

I'm 48 years old.
I always feel like that is an important thing to share.

I have had difficulties since childhood, and that was all I knew;
and I am speaking of the nature, or identity, of those difficulties.
I only knew them like that, but I never considered them to be
related to any one thing. In fact, I was completely blind to them.

Obviously, I can’t mean that I was not constantly aware of them,
or everything I just said would make no sense. I was blind to
them in the sense that I was unable to see that some part of
my personality was responsible for them; first cause.

That all may sound more intense than I intend it to be, but that
is what it looks like under a magnifying glass. That is how I have
lived my entire life; analyzing everything with the kind of
preoccupation that always causes me to overthink, overcomplicate
overanalyze. That includes introspection.

Here is another thing; this is very interesting. I speak of this in
the past-tense, but it isn’t something that will ever be in my
past. I don’t mean that in some hopeless, or despairing way.

It is a recognition. I am who I have always been. I don’t want
to be rid of any part of it. However, it can be managed and
directed. It has always been the part of me, that made me unique.
The core of my greatest strengths are the outward workings
of this invisible unknowable part of myself.
I have always aware of as well. This is proof to me, that it is not
imperative that I understand it all now.

I had to read up just now to see whether I had yet mentioned
that I am autistic. That’s another thing I always seem to take
for granted; that others know what I am talking about.
I try not to do that; make that particular assumption. I still do it.

I always thought that it was strange, in an alluring and peculiar sense;
that I can, even now, distinctly recall a few occasions; a morning
that was so notably better than all others, that it had power over
decades, to remain so conspicuous.

If it were reversed, and the most conspicuous days of my childhood
were the worst,then that would make more sense to me.

The reason I brought up that little oddity is because it is subtle. It best describes
the tenor and magnitude of a thousand little clues, that were persistent.
Tiny details that alone would escape relevance; but over a lifetime, considered
at once, would comprise a body of evidence.

In contrast to a lifetime of analysis that was also persistently, and imperceptibly
accumulating tiny observations of humanity, that would eventually emerge as
the body of comparison. The end of a lifetime of suspicions I could not even
identify.

Eventually I had sufficient evidence to bring an indictment against the notion
that I was the same as everyone else, or that they were the same as me.
That was the biggest part of a latent realization, that led to that recognition.

It wasn’t that I had suddenly become aware that there was something wrong.
It was the awareness that what I had always thought was wrong, was nothing
more than never fully knowing who I really was.

I have to put a TO BE CONTINUED here, otherwise, it will become too sprawling.
I encourage you to remain calm, everything is going to be well with you.
Even better than just well, I suspect.

I was diagnosed at 11. I was diagnosed with a "mild" Asperger's - however all my mental health treatment providers that I've had since agree there's nothing mild about it.

[BriarWolf86]

Hi there! I got my official diagnosis a few days ago on May 9th. After reading your post, I get the feeling that you may be feeling a lot like I did for years. I am also insured through Medicaid, so I hope my response can help a little. I'll try to explain as briefly as I can: 1.) how you can find a professional to evaluate you and 2. ) how the evaluation process went for me, including a list of tests administered during the process.

If you'd like to know more, feel free to ask anything. I'm an open book.

1. Since you are insured by Medicaid, you should be able to find a directory for psychologists in your area on your State's version of the insurer's website. I have WellCare Medicaid of Georgia, so mine is probably on that list for my area, but that was not how I found her. She had actually evaluated both of my twins about a year ago, and suspected that I was autistic (like both of them) during the parent interview. This is just an opinion, but I recommend a psychologist - specifically - because that's how I got my diagnosis. My psychologist works in diagnosing both children and adults. You should be able to call the providers in the directory and explain that you feel quite strongly that a full evaluation - one that includes a potential diagnosis of ASD - would be appropriate for you. If they can't provide an official diagnosis, they may be able to refer you to another doctor who can.

As I stated before, after reading your post I feel like you may be having some feelings very similar to those I had for years. I was nervous and often reluctant to bring up anything to do with possibly being diagnosed with autism, because I was worried that any medical professional wouldn't give me an 'unbiased evaluation', and would just think I was 'self diagnosing', being 'generally paranoid', seeking disability, controlled substances, sympathy, etc... No good doctor should treat you that way, and if you run into one who does, I urge you not to take it personally. However, choosing a good doctor on Medicaid is key here, because most Medicaid plans will only allow an individual to be evaluated periodically (once each year or two) unless additional evaluations are warranted due to a medical recommendation or a legal necessity. I wouldn't necessarily print articles and highlight portions that you feel you can relate to, but I think you are definitely on the right track with jotting things down in a notebook and bringing that along.

Based on your family history of ASD, I don't believe any experienced medical professional would disregard the possibility that you may be on the spectrum as well.

2. My evaluation took place over the course of three appointments. At my first appointment - which was on April 20th and was about 90 minutes long - I was interviewed by the psychologist who asked questions and made notes about my responses. This was called my 'intake appointment'. I was given two forms to fill out myself, as well as another form for a close friend or family member to fill out. Those forms forms were completed and returned to my psychologist for my second appointment, which was on April 26th and was about 3 hours long. During the second appointment another staff member administered a series of tests, which I will list the names of at the end of my response. My third appointment was called my 'feedback appointment'. My third appointment was on May 9th, and it was about 90 minutes long. I received a printed detail of my evaluation with an official diagnosis, which I was asked to sit and read before speaking once more with the psychologist to ask questions, receive referrals for treatment, and/or to discuss with her any information in my feedback which I felt may be inaccurate.

The following list is - word for word - listed on my evaluation feedback. I'm unsure if these tests are all routine for any evaluation, or if they were given in my evaluation based solely on my answers provided to questions asked during my interview with the psychologist during my first appointment. You can probably search the individual test names for details about what they involve, and again, you are welcome to ask me anything you want. I'm an open book.

Tests Administered:
Detailed Clinical Interview With Client
Behavioral Observations
Wechsler Abbreviated Scales of Intelligence (WASI)
Bender Visual-Motor Gestalt Test-Second Edition (BG-II)
Conners' Continuous Performance Test, Third Edition (CPT-3)
Personal Problems Checklist - Adult
The Clinical Assessment of Attention-Deficit, Adult (CAT-A)
Trauma Symptom Inventory, Second Edition (TSI-2)
Personality Assessment Inventory (PAI)
Social Responsiveness Scale-Second Edition, Two Versions
- Adult Self-Report
- Relative/Other Report
Adult Sentence Completion Form
Thematic Apperception Test (TAT)

With regard to your inclination to believe another sibling may also be on the spectrum, that is completely normal and fine, and however you choose to approach - or not approach - that possibility is up to you. I would recommend possibly waiting for your own evaluation results before attempting to have a conversation about it. Speaking with your evaluating medical professional about that might be a good option.

I hope that was at least somewhat helpful, and I wish you luck.

[kkrrhh]

Thank you 3 so much for the replies and encouragement!

About a week after posting this, I managed to find a psychologist who actually seemed like the best bet out of those my insurance covered. Their site didn't have much detail but did mention testing for "developmental disabilities" among other things and say they counseled adults and children, so I kind of hoped for the best and made an appointment. I went for an hour long initial appointment last week. Toward the beginning he asked why I believed I might be autistic but I froze somewhat and only gave a bit of jumbled explanation. We moved on to talking about general psych and life history stuff before I ever specifically asked, "do you officially diagnose autism in adults," but I got the feeling he did. We got back to autism later and without me even having mentioned it or said much he started talking about how autism was believed to be under recognized in women and many thought the symptoms could present differently...if I hadn't been feeling so detached and anxious, I probably would have been so ecstatic I'd screamed, haha. After stories I'd heard, I was nervous about even mentioning adult diagnosis to a psychologist, much less the whole gender difference thing, for fear of being waved off, and he seemed to be knowledgeable and believe it on his own. So to me, that was the really good sign I needed.

I now have a second appointment, unfortunately a month away, but I'm not even entirely sure exactly what it's going to be for. During the assessment he mentioned that I'll definitely do an IQ test and be tested for verbal something or other and a few other things before moving on to others, and I think at least some of it is specifically related to autism evaluation, so I guess he is going to really carry through with that? I don't know why some tiny part of me is hesitant and afraid he's just humoring me, since he wasn't super clear on things, didn't specifically mention actual autism diagnosis much, and did at one or two points say something about diagnosis occasionally being an unnecessary label for some people. I know that it's probably a plan as we go sort of thing where the next steps depend on how each test goes, but it makes me nervous that he didn't explain very far into the process, and he'd mentioned counseling for my depression and continuing a general evaluation so the fact that he requested a follow up doesn't necessarily mean he's mainly focusing more on the autism thing. I'm absolutely open for any testing (especially since he's experienced with ADHD and I think ADHD-PI is a tiny possibility for me) but I just hope there's going to be a legitimate, thorough focus on the autism thing through it all.

At the end of the appointment I gave him the 4 pages of notes I'd brought along since I knew I hadn't covered a lot of it and he wanted to make copies to keep and look at, so I'm hoping that'll help explain and give him more necessary info. I'd just quickly typed them at the last minute though, and am afraid they don't explain things that well. I'm also kind of upset that I purposely left out any points related to anything "unofficial" I've read about women-specific symptoms (which makes up a lot of my reasoning and suspicions) since I thought it'd annoy a doctor, when he would have taken that legitimately after all.

Sorry this is rambly and badly-written, I'm tired right now and just full of nerves about this whole thing, ha.

BriarWolf86, your detailed response was so helpful and calmed my nerves since things felt a little less unpredictable. I really appreciate it, and I definitely might be back with questions at some point.
Thanks again!

[Rose76]

I think you may be ascribing too much concreteness to the diagnosis of ASD/Asperger's. Because you're smart, you might want to aquaint yourself a bit more with the philosophy of scientific truth. A psychiatric diagnosis is an intellectual construct that exists in the minds of practitioners who find it useful to refer to. It may correspond to an actual condition of the patient so diagnosed. That's a big maybe, from a scientific point of view. Calling the diagnosis neurological, rather than psychiatric, doesn't make it any less a "theoretical model."

To illustrate my point, I like to bring up the diagnosis of "neurasthenia." That was a popular diagnisis in the 70s, when I was a nursing student. It doesn't really exist anymore as a diagnosis. So back when all those patients were hospitalized for "having" neurasthenia, what was it, exactly, that they had? Ans: Probably a variety of things.

The most any diagnostician can say, with assurance, is that you seem to exhibit characteristics that are associated with a pattern that diagnosticians like to call Asperger's/autism. An argument can be made that you qualify for that diagnosis. More than likely, you will always be able to find clinicians who can make an argument that you don't.

You've heard the expression that "A rose by any other name would smell as sweet." I think it's worth looking at the why behind your desire to rule in, or out, a specific label. Generally, the usefulness of a theoretical model is its ability to predict. Does calling an individual autistic allow us to accurately infer things about that individual, just based on their being in that category . . . that can't just as easily be explained in other ways? That's actually kind of a high bar to get over. Ex: Lots of people are socially awkward without necessarily qualifying for a diagnosis of ASD.

We can expand the "spectrum" concept to include just about any and every body. That dilutes it to meaninglessness, assuming it had a lot of meaning in the first place. I, myself, am somewhat suspicious of this trend toward the broadening of diagnostic categories. At the same time, however, I concur with the idea that a lot of psychological phenomena should be viewed as spectrum conditions. What I most object to is taking what is really a "trait" and elevating it to what basically defines the individual. Ex: Lots of people are narcissistic, without necessarily "having" narcissistic personality disorder. But where do you draw the line? That, my friends, is eminently arguable. How one argues can be unscientifically influenced by one's agenda.

I don't think I've had two psychiatrists (out of many) give me the same diagnosis. Furthermore, I think I can extract one diagnosis, rather than another, out of a doctor by how I present myself. It is very much in the nature of psychiatry, I believe, that "artifacts" are created. That's when the characteristics of what is being observed are, to some extent, generated by the process of how the observation is being made. The most honest psychiatrist I've ever met said that it takes years of knowing a patient to evolve a firm sense of what is true psychologically about that individual. In the meantime, he said, pdocs make "guesses." To say that their "conclusions" are more than mere guesses is, according to his view, silly. So your concern about the lengthy time needed to ascertain things is well founded.

[Nike007]

I was diagnosed at 16 years old with high function autism spectrum disorder (ASD).
I did like half adult test, half children test. I may have to get another one done again because I may have to get full adult tests done. I need to ask about this.

I say a psychologist is probably better for diagnosis, which in your new update, you said you saw. My first pdoc said that she couldn't diagnose autism, but did believe I have/had it, so I found a psychologist to do one.

I'm in Canada, and I probably could have got diagnosed with ASD through our health plan (OHIP). But I also did it for learning disabilities. When you said your psychologist said something about verbal, they have been referring to non-verbal learning disorder (NVLD). It's quite common for people with Aspergers at least to have NVLD too. Autism and NVLD have some overlapping symptoms.

My sessions were over the span of 2 weeks. I had 3 sessions, each about 2-3 hours long.

For me, this is what happened: I showed up with nothing (well, my clothes, but nothing special). They gave me and my mom a bunch of forms to fill out (my mom since I was under 18). But I have heard adults being diagnosed with a parent interview. Like, the psychologist asked the person's parents questions about their childhood. But anyways, and then I had to do a bunch of tests. You don't need/shouldn't prepare for them. That may ruin the "true" results.

Tests I did included:
Wechsler Adult Intelligence Scale - 4th edition (WAIS-IV)
Wide Range Assessment of Memory and Learning - 2nd edition (WRAML2)
Conners Rating Scales - 3rd edition (Conners-3)
Teast of Everyday Attention for Children (TEA-Ch)
Conners' Continuous Performance Test II (CPT-II)
Behaviour Rating Inventory of Executive Functions - 2nd edition (BRIEF2)
Wisconsin Card Soring Test - 64 (WCST-64)
Delis-Kaplan Executive Function System (D-KEFS)
NEPSY - 2nd edition (NEPSY-II)
Kaufman Test of Educational Achievement - 3 Edition (KTEA-3)
Nelson-Denny Reading Test (N-DRT)
Conners Comprehensive Behaviour Rating Scales (CBRS)
Social Responsiveness Scale - 2nd edition
Behaviour Assessment System for Children - 2nd edition (BASC-2)
Autism Diagnostic Observation Survey (Module 4)

ADOS-4 is probably one of the best, if not the best, for autism out there. It is quite known for being accurate in terms of its diagnosis. I met the criteria for autism spectrum under ADOS.

Oh, and the results took a month to get back. I was quite anxious about it between after the test and the results...

For me, I like that I know because it explains so much about me. I know what to work on. I'm going to be joining an autism spectrum therapy group once it starts running, so hopefully that will be good. For me, I mainly got this assessment for accommodations for school, because I would fail most of my courses if I didn't.

Good luck on your journey.